1 Of 18 Down…..

I’m not going to lie, this past week has been a hard one, not just for Sam and I being so far away, but for Mum, as her treatment took a giant leap into the ‘overwhelming zone’ yesterday.

As mentioned in my previous post, Mum now requires full blown radiation treatment to attack the tumours in her brain as well as the bone of her right upper arm, so to say this past week has been a busy one is a bit of an understatement. Let’s start from the Tuesday…..

Tuesday was the day Mum was fitted and measured for her “radiation mask”. In short, a piece of plastic mesh is melted over the face to create a made-to-fit special mask that is designed to keep the treatment area still during radiotherapy in order to make it as accurate as possible. The masks aren’t pretty, in fact they’re pretty confronting, and look like they’re straight off the set of a horror movie, but at least the lipstick Mum was clearly wearing for this fitting makes it a little less Texas Chainsaw Massacre – image below.

From here, Mum had a meeting with the orthopedic (bone) specialist, where results from her recent PET and MRI scans were discussed. Unfortunately, it appears as though the cancer has slowly degraded the bone in her arm, resulting in it becoming quite thin and fragile, and at risk of crumbling or fracturing from the amount of radiation Mum is about to receive. The plan to, hopefully, counteract this, is to surgically insert a metal rod from the rotator cuff down to the elbow, with a few cross pins along the way. This surgery is due to take place after the radiation (a bonus – radiation takes time to damage bone once in the system, so the surgery doesn’t necessarily have to take place immediately), and is scheduled for some time after June 1st.

On Wednesday, Mum met with her oncologist to discuss how the radiation therapies were going to disrupt her immunotherapy treatments. This is where we received one bought of good news, finally. Thankfully, the second infusion doesn’t need to be pushed back as previously thought, as after a discussion between the oncologist and radiation therapist, they don’t believe there is going to be an adverse effect, and are allowing the infusion to continue as scheduled. Therefore, Mum’s second immunotherapy infusion is scheduled for Wednesday the 10th of May, with the 3rd infusion taking place shortly after the radiation therapies conclude. It’s a lot, her body is going to feel it, but at least nothing is being put off, and this a very good thing.

Friday. Radiation commencement day. Mum received her first of 18 radiation treatments yesterday, and was also given her treatment schedule for the next few weeks (attached below). She’s feeling OK, apart from a bit of warmth to the area there apparently wasn’t much discomfort at all. The dexamethasone (steroids) Mum is on twice daily is hopefully going to counteract a lot of the symptoms, but there are two outcomes that can’t be avoided; 1. weight gain/bloating from the steroids, and 2. total hair loss – every woman’s worst nightmare, really!

So lets be honest here, the next few weeks are going to suck, however Mum is remaining extremely positive and is blowing me away with how she is taking each blow with continued strength and a kick-ass attitude. I know with everything she must be feeling incredibly overwhelmed, but speaking to her you wouldn’t know it; she’s a little bit awesome.

I also want to say a huge thank you to my aunts Kerri and Julie, who continue to make sure Mum is at all of her scheduled appointments and treatments, and make sure she always has visitors and company on the weekends. Sam and I, being so far away, appreciate you both more than you know, so thank you, you’re both amazing.

As always, I’ll continue to keep you all updated over the next few weeks – let’s all cross our fingers and hope that these radiation doses work and destroy the hell out of each and every one of those damn tumours!

Speak soon,

Alex

 

 

Radiation Month

Just a short, but not so sweet update for you all.

As mentioned in the previous post, the 27th of April was the scheduled day for another MRI, followed up by an appointment with the radiation oncologist to discuss potential treatment. You may remember that we discussed stereostatic radiotherapy, where the few tumours in the brain could be blasted with a special, pinpointed beam of radiation. Unfortunately, this won’t be the method of treatment anymore, as a close review of Mum’s CT scan from last week, along with the most recent MRI, determined that there are a total of 12 tumours now in mum’s brain alone, meaning there are too many for stereostatic radiotherapy to be effective. Instead, whole brain radiation therapy will be required, given over a total of 18 treatments, Monday-Friday, for the next 3.5 weeks. On top of this, as radiation can interact adversely with Mum’s immunotherapy drugs, her next immunotherapy treatment will have to be pushed back 10 days.

Lastly, the cancer cells present in the bone marrow of the right forearm have been causing Mum a lot of pain and discomfort. As a result she has been prescribed 5mg of Endone and Targin 5/2.5 twice daily to help with this. A single blast of radiation will also be delivered to the arm to try to kill off these cells, so let’s hope it works!!

I’ll keep everyone updated as much as I can over the next few weeks, as no doubt these are going to be amongst the hardest for Mum. She’s being incredibly positive and taking everything in her stride, both myself and my sister Sam are so incredibly proud of her.

Let’s hope for some positive news to go with my next update!

Alex

P.s To finish on a positive note, I’ve attached a photo of Mum and her sister Julie from their visit to The Dandenongs last weekend – terminal cancer has never looked so good!

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Treatment & Tumours

Where to begin with this post?!

The age old saying “one step forward, two steps back” definitely applies to Mum this week, so lets start on a high note – the step forward.

As mentioned in the previous post, Mum was scheduled to receive her first IV immunotherapy dose this week. Leading up to this day, Mum had been experiencing regular migraines, insomnia, increased pain in her right forearm, and sporadic numbness in her right foot – all points she took with her on treatment day, which began with an appointment with her oncologist. To be on the safe side, before her immunotherapy treatment that afternoon, Mum was sent for another CT of the brain to investigate these awesome new symptoms – more on these results later.

The first dose of treatment went relatively smoothly, with Mum and her sister Kerri selfie-sticking their way through the experience. Mum has now been commenced on a mixture of two different immunotherapy infusion drugs given one after the other with a saline flush in between. All up, the treatment takes roughly 90 minutes. The names of the infusions are Opdivo (Nivolumab) and Yervoy (Ipilimumab), together sounding like the latest soprano boy band to come out of Spain. Mum was also commenced on regular daily Dexamethasone (steroid medication) to help with any potential side effects from the infusion, and sent home to rest.

Once home, Mum received a follow up phone call from her oncologist with results of the CT scan from earlier in the day. The findings were not good. Mum’s existing 3 tumours on the right side of her brain had grown considerably, with multiple new metastasis (tumours) now present. As can be seen in the image at the end of this post, the largest is located at the base of the brain, (left occipital, for the nurses reading – image is flipped) measuring in at 14 x 16 mm in diameter. This definitely explains the recent deluge of symptoms Mum had been experiencing.

So what now? To avoid beating around the bush, as Mum’s oncologist put it, this isn’t an ideal development, and as a result treatment is going to be stepped up with everything available now being thrown at it. Radiation therapy is also now back on the table as a result of the tumours in the brain growing and spreading so rapidly. Below is Mum’s schedule for next week:

24/4 – Blood Tests: FBC (full blood count), UEC (Urea, Electrolytes & Creatinine), LFT (Liver Function Test) and Troponin levels (heart/cardiac test).                                                            

26/4 – Appointment with oncologist to discuss blood results

27/4 – MRI at 08.30, followed by an appointment at 11.45 to see the radiotherapist to discuss stereostatic radiotherapy (I’ll explain what this is below).

Plus recurrent blood tests every Monday thereafter.

It’s going to be a busy week, but on the plus side, it feels like Mum’s oncology team is finally getting serious and are now doing everything they possibly can for her. Mum, in typical Pam style, is being incredibly strong and taking it all in her stride. The headaches seem to have somewhat settled for now and the numbness and arm pain have subsided – fingers crossed it stays that way!

I’ll let you all know how everything goes next week – I’m sure there is going to be a lot to fill you in on!

Alex

Stereostatic Radiotherapy

Stereotactic Radiotherapy (SRT) is a specialised type of radiotherapy that can be used to treat tumours located in the brain. A CT is usually performed to pinpoint exactly where in the brain the tumours are located. SRT then uses these scans and specialist equipment to direct thin beams of radiation very precisely at the pinpointed tumour sites. The tumours receive a high dose of radiation, while surrounding healthy tissue receives a low dose.

Stereostatic Radiotherapy usually causes fewer side effects than standard radiotherapy. These may include temporary swelling of the area being treated, soreness, tiredness, nausea, itchy skin and hair loss.